Susanna VanVickle

1 week ago | fabrydiseasenews.com | Margarida Maia |Lindsey Shapiro |Steve Bryson |Susanna VanVickle

A woman with heart failure due to late-onset Fabry disease received a heart transplant in combination with immunosuppressants and Fabrazyme (agalsidase-beta) to resolve her cardiac symptoms, which didn’t recur after the transplant. “Although the risk of disease recurrence in the transplanted organ appears to be relatively low, this observation requires further investigation with extended follow-up and a larger study sample,” wrote researchers in Poland.

3 weeks ago | fabrydiseasenews.com | Marisa Wexler |Susanna VanVickle |Mary Chapman |Jerry Walter

For Fabry Awareness Month this April, the Fabry International Network, or FIN — an alliance of 61 patient organizations in 57 countries — is shining a spotlight on doctors who have focused on caring for people with the rare inherited disease, helping patients better understand the disorder, get accurate diagnoses, and access treatments. FIN has created a webpage highlighting the work of more than a dozen doctors worldwide who care for people with Fabry disease.

1 month ago | fabrydiseasenews.com | Susanna VanVickle |Steve Bryson |Margarida Maia |Marisa Wexler

Two friends and I recently left the warmth of Texas to brave the snow and freezing temperatures of Kansas, where the three of us have sons at Benedictine College. The campus hosts a mother-son (and father-daughter) event, with a cocktail hour, a fine dinner, and a dance. It was a fantastic opportunity to spend quality time with my sons Anthony and Dominic, and I loved every minute.

2 months ago | fabrydiseasenews.com | Margarida Maia |Susanna VanVickle |Steve Bryson |Lindsey Shapiro

AL01211 may help stabilize symptoms in men with Fabry disease, while easing pain and improving quality of life, according to interim results from a Phase 2 trial. The trial (NCT06114329), underway at six sites in China, is primarily evaluating the safety of the Acelink Therapeutics treatment. AL01211 is being tested as oral capsules by mouth once daily at a dose of 30 or 60 mg in 18 men with classic Fabry who have never taken any approved medications for the disease.